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PURPOSE: Clinical work-integrating care (CWIC) refers to paying attention to work participation in a clinical setting. Working patients may benefit from CWIC. The purpose of this study is to explore the extent and nature to which medical specialists provide CWIC and what policies and guidelines oblige or recommend specialists to do. METHODS: A scoping review was conducted. The databases MEDLINE, EMBASE, Psychinfo, CINAHL, and Web of Science were searched for studies on the extent and nature of CWIC and supplemented by gray literature on policies and guidelines. Six main categories were defined a priori. Applying a meta-aggregative approach, subcategories were subsequently defined using qualitative data. Next, quantitative findings were integrated into these subcategories. A separate narrative of policies and guidelines using the same main categories was constructed. RESULTS: In total, 70 studies and 55 gray literature documents were included. The main findings per category were as follows: (1) collecting data on the occupation of patients varied widely; (2) most specialists did not routinely discuss work, but recent studies showed an increasing tendency to do so, which corresponds to recent policies and guidelines; (3) work-related advice ranged from general advice to patient-physician collaboration about work-related decisions; (4) CWIC was driven by legislation in many countries; (5) specialists sometimes collaborated in multidisciplinary teams to provide CWIC; and (6) medical guidelines regarding CWIC were generally not available. CONCLUSION: Medical specialists provide a wide variety of CWIC ranging from assessing a patient's occupation to extensive collaboration with patients and other professionals to support work participation. Lack of medical guidelines could explain the variety of these practices.
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OBJECTIVE: To derive cluster analysis-based groupings for adults with congenital heart disease (ACHD) when it comes to perceived health, psychological functioning, health behaviours and quality of life (QoL). METHODS: This study was part of a larger worldwide multicentre study called APPROACH-IS; a cross sectional study which recruited 4028 patients (2013-2015) from 15 participating countries. A hierarchical cluster analysis was performed using Ward's method in order to group patients with similar psychological characteristics, which were defined by taking into consideration the scores of the following tests: Sense Of Coherence, Health Behavior Scale (physical exercise score), Hospital Anxiety Depression Scale, Illness Perception Questionnaire, Satisfaction with Life Scale and the Visual Analogue Scale scores of the EQ-5D perceived health scale and a linear analogue scale (0-100) measuring QoL. RESULTS: 3768 patients with complete data were divided into 3 clusters. The first and second clusters represented 89.6% of patients in the analysis who reported a good health perception, QoL, psychological functioning and the greatest amount of exercise. Patients in the third cluster reported substantially lower scores in all PROs. This cluster was characterised by a significantly higher proportion of females, a higher average age the lowest education level, more complex forms of congenital heart disease and more medical comorbidities. CONCLUSIONS: This study suggests that certain demographic and clinical characteristics may be linked to less favourable health perception, quality of life, psychological functioning, and health behaviours in ACHD. This information may be used to improve psychosocial screening and the timely provision of psychosocial care.
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Cardiopatias Congênitas/psicologia , Qualidade de Vida , Adulto , Análise por Conglomerados , Estudos Transversais , Exercício Físico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The relationship between healthcare system inputs (e.g., human resources and infrastructure) and mortality has been extensively studied. However, the association between healthcare system inputs and patient-reported outcomes remains unclear. Hence, we explored the predictive value of human resources and infrastructures of the countries' healthcare system on patient-reported outcomes in adults with congenital heart disease. METHODS: This cross-sectional study included 3588 patients with congenital heart disease (median age = 31y; IQR = 16.0; 52% women; 26% simple, 49% moderate, and 25% complex defects) from 15 countries. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviors, and quality of life. The assessed inputs of the healthcare system were: (i) human resources (i.e., density of physicians and nurses, both per 1000 people) and (ii) infrastructure (i.e., density of hospital beds per 10,000 people). Univariable, multivariable, and sensitivity analyses using general linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. RESULTS: Sensitivity analyses showed that higher density of physicians was significantly associated with better self-reported physical and mental health, less psychological distress, and better quality of life. A greater number of nurses was significantly associated with better self-reported physical health, less psychological distress, and less risky health behavior. No associations between a higher density of hospital beds and patient-reported outcomes were observed. CONCLUSIONS: This explorative study suggests that density of human resources for health, measured on country level, are associated with patient-reported outcomes in adults with congenital heart disease. More research needs to be conducted before firm conclusions about the relationships observed can be drawn. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02150603. Registered 30 May 2014.
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Atenção à Saúde/organização & administração , Mão de Obra em Saúde/estatística & dados numéricos , Cardiopatias Congênitas/terapia , Medidas de Resultados Relatados pelo Paciente , Adulto , Estudos Transversais , Feminino , Saúde Global , Humanos , MasculinoRESUMO
BACKGROUND: Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). METHODS: From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale). Primary CHD diagnosis, disease complexity, surgical history, and documented history of mood and anxiety disorders were recorded. Differences in QOL, medical complications, and mood and anxiety disorders between Fontan and ASD/VSD patients, and across geographic regions, were examined using analysis of covariance. Hierarchical regression analyses were conducted to identify variables associated with the QOL ratings. RESULTS: Patients with a Fontan reported significantly lower QOL, and greater medical complications and mood and anxiety disorders relative to patients with ASD/VSD. Inpatient cardiac admissions, mood disorders, and anxiety disorders were associated with lower QOL among patients with a Fontan, and mood disorders were associated with lower QOL among patients with ASD/VSD. Regional differences for QOL were not observed in patients with a Fontan; however, significant differences were identified in patients with ASD/VSD. CONCLUSIONS: Regional variation of QOL is commonplace in adults with CHD; however, it appears affected by greater disease burden. Among patients with a Fontan, regional variation of QOL is lost. Specific attempts to screen for QOL and mood and anxiety disorders among CHD patients may improve the care of patients with the greatest disease burden.
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Transtornos de Ansiedade/psicologia , Comunicação Interatrial/psicologia , Comunicação Interventricular/psicologia , Qualidade de Vida , Adulto , Transtornos de Ansiedade/epidemiologia , Transtornos de Ansiedade/etiologia , Estudos Transversais , Feminino , Seguimentos , Saúde Global , Comunicação Interatrial/complicações , Comunicação Interatrial/epidemiologia , Comunicação Interventricular/complicações , Comunicação Interventricular/epidemiologia , Humanos , Incidência , Masculino , PrevalênciaRESUMO
BACKGROUND: A comprehensive understanding of adult congenital heart disease outcomes must include psychological functioning. Our multisite study offered the opportunity to explore depression and anxiety symptoms within a global sample. OBJECTIVES: In this substudy of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults With Congenital Heart Disease-International Study), the authors we investigated the prevalence of elevated depression and anxiety symptoms, explored associated sociodemographic and medical factors, and examined how quality of life (QOL) and health status (HS) differ according to the degree of psychological symptoms. METHODS: Participants completed the Hospital Anxiety and Depression Scale, which includes subscales for symptoms of anxiety (HADS-A) and depression (HADS-D). Subscale scores of 8 or higher indicate clinically elevated symptoms and can be further categorized as mild, moderate, or severe. Participants also completed analogue scales on a scale of 0 to 100 for QOL and HS. Analysis of variance was performed to investigate whether QOL and HS differed by symptom category. RESULTS: Of 3,815 participants from 15 countries (age 34.8 ± 12.9 years; 52.7% female), 1,148 (30.1%) had elevated symptoms in one or both subscales: elevated HADS-A only (18.3%), elevated HADS-D only (2.9%), or elevations on both subscales (8.9%). Percentages varied among countries. Both QOL and HS decreased in accordance with increasing HADS-A and HADS-D symptom categories (P < 0.001). CONCLUSIONS: In this global sample of adults with congenital heart disease, almost one-third reported elevated symptoms of depression and/or anxiety, which in turn were associated with lower QOL and HS. We strongly advocate for the implementation of strategies to recognize and manage psychological distress in clinical settings. (Patient-Reported Outcomes in Adults With Congenital Heart Disease [APPROACH-IS]; NCT02150603).
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Cardiopatias Congênitas , Qualidade de Vida , Adulto , Humanos , Feminino , Adulto Jovem , Pessoa de Meia-Idade , Masculino , Qualidade de Vida/psicologia , Depressão/diagnóstico , Depressão/epidemiologia , Depressão/etiologia , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/epidemiologia , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Ansiedade/psicologiaRESUMO
The congenital heart disease (CHD) population now comprises an increasing number of older persons in their 6th decade of life and beyond. We cross-sectionally evaluated patient-reported outcomes (PROs) in persons with CHD aged 60 years or older, and contrasted these with PROs of younger patients aged 40-59 years and 18-39 years. Adjusted for demographic and medical characteristics, patients ≥60 years had a lower Physical Component Summary, higher Mental Component Summary, and lower anxiety (Hospital Anxiety and Depression Scale-Anxiety) scores than patients in the two younger categories. For satisfaction with life, older persons had a higher score than patients aged 40-59 years. Registration: ClinicalTrials.gov NCT02150603.
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Cardiopatias Congênitas , Adulto , Humanos , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Cardiopatias Congênitas/epidemiologia , Ansiedade/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Envelhecimento , Qualidade de VidaRESUMO
PURPOSE: Attention to paid work in clinical health care-clinical work-integrating care (CWIC)-might be beneficial for patients of working age. However, the perceptions and expectations of patients about CWIC are unknown. The aim of this study was to develop an understanding of current practices, needs, and expectations among patients for discussing work with a medical specialist. MATERIALS AND METHODS: A qualitative study was undertaken involving patients with diverse medical conditions (n = 33). Eight online synchronous focus groups were held. A thematic analysis was then performed. RESULTS: Three themes emerged from the data: (1) the process of becoming a patient while wanting to work again, (2) different needs for different patients, (3) patients' expectations of CWIC. We identified three different overarching categories of work-concerns: (a) the impact of work on disease, (b) the impact of disease or treatment on work ability, and (c) concerns when work ability remained decreased. For each category of concerns, patients expected medical specialists to perform differing roles. CONCLUSIONS: Patients indicated that they need support for work-related concerns from their medical specialists and/or other professionals. Currently, not all work concerns received the requested attention, leaving a portion of the patients with unmet needs regarding CWIC.
Patients have a wide range of questions regarding work and health, which they want to discuss with their medical specialistIn current clinical practice, not all work concerns get the requested attention, leaving some patients with unmet needsCooperation with different health care professionals, including rehabilitation occupational health care, might aid in supporting patients with their work-related questions.
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Background Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease. Methods and Results As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms. Conclusions HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception. Registration URL: https://clinicaltrials.gov; Unique identifier: NCT02150603.
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Cardiopatias Congênitas , Insuficiência Cardíaca , Adulto , Nível de Saúde , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/terapia , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/terapia , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de VidaRESUMO
In this international study, we (1) compared patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) who had versus had not been hospitalized during the previous 12 month, (2) contrasted PROs in patients who had been hospitalized for cardiac surgery versus nonsurgical reasons, (3) assessed the magnitude of differences between the groups (i.e., effect sizes), and (4) explored differential effect sizes between countries. APPROACH-IS was a cross-sectional, observational study that enrolled 4,028 patients from 15 countries (median age 32 years; 53% females). Self-report questionnaires were administered to measure PROs: health status; anxiety and depression; and quality of life. Overall, 668 patients (17%) had been hospitalized in the previous 12 months. These patients reported poorer outcomes on all PROs, with the exception of anxiety. Patients who underwent cardiac surgery demonstrated a better quality of life compared with those who were hospitalized for nonsurgical reasons. For significant differences, the effect sizes were small, whereas they were negligible in nonsignificant comparisons. Substantial intercountry differences were observed. For various PROs, moderate to large effect sizes were found comparing different countries. In conclusion, adults with CHD who had undergone hospitalization in the previous year had poorer PROs than those who were medically stable. Researchers ought to account for the timing of recruitment when conducting PRO research as hospitalization can impact results.
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Ansiedade/psicologia , Depressão/psicologia , Nível de Saúde , Cardiopatias Congênitas/fisiopatologia , Hospitalização , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adulto , Procedimentos Cirúrgicos Cardíacos , Feminino , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/cirurgia , Humanos , Internacionalidade , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
BACKGROUND: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects. METHODS: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect. RESULTS: Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%). CONCLUSIONS: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.
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Estado Funcional , Saúde Global/estatística & dados numéricos , Cardiopatias Congênitas , Saúde Mental , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adulto , Assistência ao Convalescente/estatística & dados numéricos , Correlação de Dados , Estudos Transversais , Feminino , Disparidades nos Níveis de Saúde , Cardiopatias Congênitas/classificação , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/terapia , Humanos , Masculino , Desempenho Físico FuncionalRESUMO
BACKGROUND: Previous studies have found that sense of coherence (SOC) is positively related to quality of life (QoL) in persons with chronic conditions. In congenital heart disease (CHD), the evidence is scant. AIMS: We investigated (i) intercountry variation in SOC in a large international sample of adults with CHD; (ii) the relationship between demographic and clinical characteristics and SOC; (iii) the relationship between cultural dimensions of countries and SOC; and (iv) variation in relative importance of SOC in explaining QoL across the countries. METHODS: APPROACH-IS was a cross-sectional, observational study, with 4028 patients from 15 countries enrolled. SOC was measured using the 13-item SOC scale (range 13-91) and QoL was assessed by a linear analog scale (range 0-100). RESULTS: The mean SOC score was 65.5±13.2. Large intercountry variation was observed with the strongest SOC in Switzerland (68.8±11.1) and the lowest SOC in Japan (59.9±14.5). A lower SOC was associated with a younger age; lower educational level; with job seeking, being unemployed or disabled; unmarried, divorced or widowed; from a worse functional class; and simple CHD. Power distance index and individualism vs collectivism were cultural dimensions significantly related to SOC. SOC was positively associated with QoL in all participating countries and in the total sample, with an explained variance ranging from 5.8% in Argentina to 30.4% in Japan. CONCLUSION: In adults with CHD, SOC is positively associated with QoL. The implementation of SOC-enhancing interventions might improve QoL, but strategies would likely differ across countries given the substantial variation in explained variance.
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Cardiopatias Congênitas , Senso de Coerência , Adulto , Estudos Transversais , Características Culturais , Humanos , Qualidade de VidaRESUMO
BACKGROUND: Atrial arrhythmias (ie, intra-atrial reentrant tachycardia and atrial fibrillation) are a leading cause of morbidity and hospitalization in adults with congenital heart disease (CHD). Little is known about their effect on quality of life and other patient-reported outcomes (PROs) in adults with CHD. OBJECTIVE: The purpose of this study was to assess the impact of atrial arrhythmias on PROs in adults with CHD and explore geographic variations. METHODS: Associations between atrial arrhythmias and PROs were assessed in a cross-sectional study of adults with CHD from 15 countries spanning 5 continents. A propensity-based matching weight analysis was performed to compare quality of life, perceived health status, psychological distress, sense of coherence, and illness perception in patients with and those without atrial arrhythmias. RESULTS: A total of 4028 adults with CHD were enrolled, 707 (17.6%) of whom had atrial arrhythmias. After applying matching weights, patients with and those without atrial arrhythmias were comparable with regard to age (mean 40.1 vs 40.2 years), demographic variables (52.5% vs 52.2% women), and complexity of CHD (15.9% simple, 44.8% moderate, and 39.2% complex in both groups). Patients with atrial arrhythmias had significantly worse PRO scores with respect to quality of life, perceived health status, psychological distress (ie, depression), and illness perception. A summary score that combines all PRO measures was significantly lower in patients with atrial arrhythmias (-3.3%; P = .0006). Differences in PROs were consistent across geographic regions. CONCLUSION: Atrial arrhythmias in adults with CHD are associated with an adverse impact on a broad range of PROs consistently across various geographic regions.
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Fibrilação Atrial/etiologia , Cardiopatias Congênitas/complicações , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adulto , Fibrilação Atrial/epidemiologia , Fibrilação Atrial/fisiopatologia , Estudos Transversais , Feminino , Saúde Global , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/fisiopatologia , Humanos , Masculino , Morbidade/tendênciasRESUMO
BACKGROUND: Implantable cardioverter-defibrillators (ICDs) are increasingly being used to prevent sudden death in the growing population of adults with congenital heart disease (CHD). However, little is known about their impact on patient-reported outcomes (PROs). OBJECTIVE: The purpose of this study was to assess and compare PROs in adults with CHD with and without ICDs. METHODS: A propensity-based matching weight analysis was conducted to evaluate PROs in an international cross-sectional study of adults with CHD from 15 countries across 5 continents. RESULTS: A total of 3188 patients were included: 107 with ICDs and 3081 weight-matched controls without ICDs. ICD recipients were an average age of 40.1 ± 12.4 years, and >95% had moderate or complex CHD. Defibrillators were implanted for primary and secondary prevention in 38.3% and 61.7%, respectively. Perceived health status, psychological distress, sense of coherence, and health behaviors did not differ significantly among patients with and without ICDs. However, ICD recipients had a more threatening view of their illness (relative % difference 8.56; P = .011). Those with secondary compared to primary prevention indications had a significantly lower quality-of-life score (Linear Analogue Scale 72.0 ± 23.1 vs 79.2 ± 13.0; P = .047). Marked geographic variations were observed. Overall sense of well-being, assessed by a summary score that combines various PROs, was significantly lower in ICD recipients (vs controls) from Switzerland, Argentina, Taiwan, and the United States. CONCLUSION: In an international cohort of adults with CHD, ICDs were associated with a more threatening illness perception, with a lower quality of life in those with secondary compared to primary prevention indications. However, marked geographic variability in PROs was observed.
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Desfibriladores Implantáveis , Cardiopatias Congênitas , Adulto , Estudos Transversais , Morte Súbita Cardíaca/epidemiologia , Morte Súbita Cardíaca/etiologia , Morte Súbita Cardíaca/prevenção & controle , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/terapia , Humanos , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Health behaviours are essential to maintain optimal health and reduce the risk of cardiovascular complications in adults with congenital heart disease. This study aimed to describe health behaviours in adults with congenital heart disease in 15 countries and to identify patient characteristics associated with optimal health behaviours in the international sample. DESIGN: This was a cross-sectional observational study. METHODS: Adults with congenital heart disease (n = 4028, median age = 32 years, interquartile range 25-42 years) completed self-report measures as part of the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS). Participants reported on seven health behaviours using the Health Behaviors Scale-Congenital Heart Disease. Demographic and medical characteristics were assessed via medical chart review and self-report. Multivariate path analyses with inverse sampling weights were used to investigate study aims. RESULTS: Health behaviour rates for the full sample were 10% binge drinking, 12% cigarette smoking, 6% recreational drug use, 72% annual dental visit, 69% twice daily tooth brushing, 27% daily dental flossing and 43% sport participation. Pairwise comparisons indicated that rates differed between countries. Rates of substance use behaviours were higher in younger, male participants. Optimal dental health behaviours were more common among older, female participants with higher educational attainment while sports participation was more frequent among participants who were younger, male, married, employed/students, with higher educational attainment, less complex anatomical defects and better functional status. CONCLUSIONS: Health behaviour rates vary by country. Predictors of health behaviours may reflect larger geographic trends. Our findings have implications for the development and implementation of programmes for the assessment and promotion of optimal health behaviours in adults with congenital heart disease.
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Exercício Físico/fisiologia , Comportamentos Relacionados com a Saúde/fisiologia , Cardiopatias Congênitas/psicologia , Medidas de Resultados Relatados pelo Paciente , Adulto , Estudos Transversais , Feminino , Saúde Global , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/fisiopatologia , Humanos , Incidência , Masculino , AutorrelatoRESUMO
OBJECTIVES: Peripheral arterial occlusive disease (PAOD) is associated with a high risk of cardiovascular events. The metabolic syndrome is a frequent condition among patients with manifest vascular disease, but the influence of the metabolic syndrome on cardiovascular events in patients with PAOD is unknown. Also, progression and regression of the metabolic syndrome after follow-up are not extensively studied. METHODS: The study population consisted of 461 patients with symptomatic PAOD from the Second Manifestations of Arterial Disease study (SMART). Patients underwent vascular screening at baseline and after a mean follow-up of 5.5 +/- 1.3 years. Hazard ratios (HRs) for vascular events according to metabolic syndrome status (updated National Cholesterol Education Program [NCEP] criteria) were calculated using Cox regression analysis. The course of the metabolic syndrome during follow-up and the influence of body mass index (BMI) on development or disappearance of the syndrome were assessed. RESULTS: During follow-up, 91 first vascular events were recorded. Cumulative 3-year survival free from vascular events was 84.7% in metabolic syndrome patients compared to 92.1% in participants without the syndrome. The metabolic syndrome was associated with an increased risk of vascular events (HR 1.51; 1.01-2.30, age- and gender-adjusted). During follow-up, 128 patients died or were lost to follow-up, and of 333 remaining patients, 221 participated in follow-up measurements. The metabolic syndrome disappeared in 16% of patients and was incident in 14% of patients during follow-up. Waist circumference increased with 10 +/- 8 cm in those developing the syndrome. A BMI decrease of 1 kg/m(2) significantly decreased the risk of metabolic syndrome development by 23% (odds ratio [OR] 0.77; 0.62-0.96), and increased the chance to revert to a non-metabolic syndrome state by 32% (OR 1.32; 1.03-1.71). CONCLUSION: The metabolic syndrome is associated with a 1.5-fold increase in risk of vascular events in PAOD patients. Weight control reduces metabolic syndrome incidence and increases metabolic syndrome resolution during follow-up.
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Arteriopatias Oclusivas/epidemiologia , Doenças Cardiovasculares/epidemiologia , Síndrome Metabólica/epidemiologia , Idoso , Comorbidade , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Doenças Vasculares Periféricas/epidemiologia , Estudos Prospectivos , Medição de Risco , Fatores de RiscoRESUMO
BACKGROUND: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries' healthcare system performance are of importance for patient-reported outcomes. AIMS: The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease. METHODS: A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences. RESULTS: Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes. CONCLUSION: Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.
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Atenção à Saúde , Cardiopatias Congênitas/psicologia , Medidas de Resultados Relatados pelo Paciente , Adulto , Estudos Transversais , Europa (Continente) , Feminino , Cardiopatias Congênitas/terapia , Humanos , Masculino , Saúde Mental , Qualidade de Vida , Adulto JovemRESUMO
OBJECTIVE: This study aimed to examine the association between physical activity (PA) and depression in a large international cohort of adults with congenital heart disease (ACHD) as data about the differential impact of PA type on depression in this population are lacking. METHODS: In 2018, we conducted a cross-sectional assessment of 3908 ACHD recruited from 24 ACHD-specialized centers in 15 countries between April 2013 to March 2015. The Hospital Anxiety and Depression Scale was used to assess self-reported depressive symptoms and the Health-Behavior Scale-Congenital Heart Disease was used to collect PA information. Cochran-Armitage tests were performed to assess trends between depressive symptom levels and PA participation. Chi-Square and Wilcoxon Rank Sum tests were utilized to examine relations between depressive symptom levels and patient characteristics. Stepwise multivariable models were then constructed to understand the independent impact of PA on depressive symptoms. RESULTS: The overall prevalence of elevated depressive symptoms in this sample was 12% with significant differences in rates between countries (pâ¯<â¯.001). Physically active individuals were less likely to be depressed than those who were sedentary. Of the 2 PA domains examined, sport participation rather than active commute was significantly associated with reduced symptoms of depression. After adjustment in multivariable analysis, sport participation was still significantly associated with 38% decreased probability of depressive symptoms (pâ¯<â¯.001). CONCLUSIONS: Sport participation is independently associated with reduced depressive symptoms. The development and promotion of sport-related exercise prescriptions uniquely designed for ACHD may improve depression status in this unique population.
Assuntos
Depressão/fisiopatologia , Exercício Físico , Cardiopatias Congênitas/psicologia , Internacionalidade , Adulto , Estudos de Coortes , Estudos Transversais , Depressão/complicações , Feminino , Comportamentos Relacionados com a Saúde , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/fisiopatologia , Humanos , Masculino , Prevalência , AutorrelatoRESUMO
BACKGROUND: Conflicting results have been reported regarding employment status and work ability in adults with congenital heart disease (CHD). Since this is an important determinant for quality of life, we assessed this in a large international adult CHD cohort. METHODS: Data from 4028 adults with CHD (53% women) from 15 different countries were collected by a uniform survey in the cross-sectional APPROACH International Study. Predictors for employment and work limitations were studied using general linear mixed models. RESULTS: Median age was 32 years (IQR 25-42) and 94% of patients had at least a high school degree. Overall employment rate was 69%, but varied substantially among countries. Higher education (OR 1.99-3.69) and having a partner (OR 1.72) were associated with more employment; female sex (OR 0.66, worse NYHA functional class (OR 0.67-0.13), and a history of congestive heart failure (OR 0.74) were associated with less employment. Limitations at work were reported in 34% and were associated with female sex (OR 1.36), increasing age (OR 1.03 per year), more severe CHD (OR 1.31-2.10), and a history of congestive heart failure (OR 1.57) or mental disorders (OR 2.26). Only a university degree was associated with fewer limitations at work (OR 0.62). CONCLUSIONS: There are genuine differences in the impact of CHD on employment status in different countries. Although the majority of adult CHD patients are employed, limitations at work are common. Education appears to be the main predictor for successful employment and should therefore be encouraged in patients with CHD.
Assuntos
Efeitos Psicossociais da Doença , Escolaridade , Emprego , Cardiopatias Congênitas/epidemiologia , Qualidade de Vida , Adulto , Estudos Transversais , Avaliação da Deficiência , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/terapia , Humanos , Descrição de Cargo , Masculino , Prognóstico , Fatores de Risco , Avaliação da Capacidade de Trabalho , Adulto JovemRESUMO
BACKGROUND: Physical activity is important to maintain and promote health. This is of particular interest in patients with congenital heart disease (CHD) where acquired heart disease should be prevented. The World Health Organization (WHO) recommends a minimum of 2.5â¯h/week of physical activity exceeding 3 metabolic equivalents (METS) to achieve positive health effects. It is unknown whether physical activity levels (PAL) in adult CHD patients differ by country of origin. METHODS: 3896 adults with CHD recruited from 15 countries over 5 continents completed self-reported instruments, including the Health Behaviour Scale (HBS-CHD), within the APPROACH-IS project. For each patient, we calculated whether WHO recommendations were achieved or not. Associated factors were investigated using Generalized Linear Mixed Models. RESULTS: On average, 31% reached the WHO recommendations but with a great variation between geographical areas (India: 10%-Norway: 53%). Predictors for physical activity level in line with the WHO recommendations, with country of residence as random effect, were male sex (OR 1.78, 95%CI 1.52-2.08), NYHA-class I (OR 3.10, 95%CI 1.71-5.62) and less complex disease (OR 1.46, 95%CI 1.16-1.83). In contrast, older age (OR 0.97, 95%CI 0.96-0.98), lower educational level (OR 0.41, 95%CI 0.26-0.64) and being unemployed (OR 0.57, 95%CI 0.42-0.77) were negatively associated with reaching WHO recommendations. CONCLUSIONS: A significant proportion of patients with CHD did not reach the WHO physical activity recommendations. There was a large variation in physical activity level by country of origin. Based on identified predictors, vulnerable patients may be identified and offered specific behavioral interventions.